The Big(D) questions: How to keep going; PD, HD or a transplant?

Last week was a big week for questions, and rather than answering them in the Comments area, it seems like a good idea to discuss some in a post.

First, Dan wrote:

Hi Greg, I’m 30 years old and I have PKD, I’ve had a transplant which unfortunately failed in January 2012. I spent a few months training to do haemo myself so I could do it at home (thinking that would make it much better) how wrong I was!  I’m not sure if it’s my age and the need to stay active but dialysis is driving me mad! I get very fidgety and agitated especially when I’m on the machine and sometimes I get so angry when I’m on there I just want to smash the bloody thing up!

My doctor wants me to do 16 hours a week because I’m a 6 ft 5 fairly big built bloke so I need more time on dialysis but I just can’t face it. ZI think I probably do 10 hours a week at a push. My blood levels are terrible with creatinine of 1500, phosphate 3.5 (apparently that’s the record in Cambridge hospital) and god knows what else. I feel like my life is slowly going down the tube with so much I haven’t achieved. I work 50 hours a week and I’m really starting to struggle. Any advice? You seem to know your stuff.

Hi Dan.  Boy, I bet you are ringing a few bells in the BigD community!

Firstly, you are not the only one who has been in this particular boat.  So many of us feel or have felt the same way.  It comes and goes, and probably will forever.  But a big part of it is that you must feel so unwell.  With figures like that, life can be pretty grim.  And if you let it go on, it could become a downward spiral.

The absolute best thing you can do is get back on the horse.  But don’t try to do it at home.  Change to environment so that it works for you.  Arrange for at least a couple of weeks of dialysis at the hospital unit.

Give your body a chance to return to normal before you start the home BigD.  That means sitting in the chair at least 4 by 4 hour sessions a week, or if (like me) you can’t last that long, bite the bullet and do 5 by 3 hr sessions a week.  I have also found that 3-hour sessions are short enough for me to be able to hold down my job.  It still leaves enough time each day for work and I can make phone calls and do some emails while I’m on the machine (though I’m not sure how productive I am during that third hour…).

I have been doing this for about 6 years now.  I get pretty sick of it at times, but I feel well most of the time, so I can usually pull myself out of the gloom.

Give it a try.  Take it slow, but keep going.  Greg

Jackie wrote:

My son, age 31 just found out he is in renal failure.  Last year in June his creatinine level was 1.8.  He is hypertensive and overweight.  Since finding this out I have been on many web sites and basically the doctor should have been doing a protein in urine test 3 or 4 times a year because my son was a prime candidate for kidney disease.

Now a year later he goes in for routine blood work and his creatinine is 2.6.  He was in for a kidney biopsy yesterday and because of anxiety issues his blood pressure was running 180/130.  They were pumping him full of blood pressure and anti-anxiety meds for 24 hours before they could get it down enough to do the biopsy.

Now we wait for the results but I am sure that it was the high blood pressure.  After the procedure my son’s blood pressure dropped to 115/75 but the doctor said when they got the pressure down to 115/75 (normal) then the creatinine levels went up (not promising).  

  1. I don’t understand why this happened.  I have been reading your blog and I would like to know how a person qualifies for PD.  My son is losing weight but still heavy especially in the stomach would this stop in from doing PD?  
  2. I have heard that hemo dialysis is much harder on the body and other organs. Is this true?
  3. How long does a fistula have to be in before using it? 
  4. What do you mean by it has to heal before using it?
  5. How do some people get a kidney transplant before they even go on dialysis?
  6. What qualifies you as a donor?
  7. I’m not positive but I think a have a couple of kidney stones does that rule me out?
  8. For transplants are you saying it will take 8 months to 12 months do get approved?
  9. I only have one son and one daughter and my husband has passed away at 58 so we don’t have a lot of options. Also, I read that people who have type O blood take much longer to get a transplant. Why? I am O positive and I believe my son is too.

So many questions!  My son is not married and still lives at home. This has been a real shock to him and he has health related anxiety already.  It comes from living with a father who also had it.

Please help! I have already lost two sons in my lifetime and can’t stand the thought of losing another.

God Bless

Jackie

Jackie, at 2.6 your son’s creatinine level indicates that his kidney function may have dropped by as much as 50%.  So you are right to be thinking about dialysis for the near future.  While this sounds pretty dramatic, remember that hundreds of thousands of people live very well on dialysis.

Here are the answers to your questions, beginning with a brief overview. 

What is dialysis?  It’s a blood cleaning system which filters the blood and passes waste products out of the body.  There are two forms dialysis.

  • Peritoneal Dialysis (PD), which uses a natural membrane of the body to remove waste products.  A small, soft plastic tube is sewn into the abdomen (a 15-30 min surgical procedure).  The tube is used to add special dialysis fluid into abdominal cavity.  Waste products are absorbed by the dialysis fluid, which is then drained out again.  Depending on the type of PD your son chooses, this can be done either by hand four times a day (called Continuous Ambulatory Peritoneal Dialysis – CAPD) by a machine overnight (called Automated Peritoneal Dialysis – APD).

PD is a relatively gentle but effective dialysis technique, and is often recommended for people starting out on dialysis.  My son is losing weight but still heavy especially in the stomach would this stop in from doing PD?  However it is not recommended for people who are very overweight.  Go to the MyKidney.org website for more PD details.

  • Haemodialysis (HD), where a cupful of blood flows continuously from the body, through a filter which removes waste and toxins and then back to the body.  The blood flows via an enlarged artery/vein called a fistula, created surgically up to 12 months before.  The whole process happens outside the body.  It takes 3-4 hours each time, repeated about 3 times per week.  During each session, the equivalent of all the blood in the body is filtered several times.

Hemo dialysis is much harder on the body and other organs. Is this true?  HD has a higher impact on the body than PD, but most people adjust after a few weeks.  Most studies show that HD offers a longer survival rate for long-term patients.  Go to the MyKidney.org website for more HD details.

How long does a fistula have to be in before using it?  What do you mean by it has to heal before using it?  A fistula operation joins a high pressure artery to a low pressure vein.  Once joined, the high pressure of the artery gradually expands the size of the vein.  After a few weeks/months it grows enough to become an ideal place to insert the needles.

How do some people get a kidney transplant before they even go on dialysis?  It is rare for people to receive a transplant before they go onto dialysis, not least because of the shortage of (deceased) donors.  It may be possible if you have access to a family member or friend who is both compatible and prepared to donate.  But remember (though you may have to go through a transplant to believe it), a transplant is not a cure; it is just another kind of treatment.  In my experience, I think I was more prepared for the benefits of a transplant after I had been on dialysis for a year or so.  Then at least I could make a realistic comparison between the two treatments.  Don’t rush into it.

What qualifies you as a donor?  The primary qualifications are blood and tissue compatibility, general health (so you don’t suffer from the loss of the kidney), the health of your kidneys and psychological fitness.  Some people can be very unlucky.  I know of one situation where a wife donated one of her kidneys to her husband, the husband’s transplanted kidney failed; she lost the function of her other kidney and had to go onto dialysis; she couldn’t handle dialysis and eventually passed away.

I have a couple of kidney stones does that rule me out?  It depends on whether or how much the stones have damaged the kidneys.

For transplants are you saying it will take 8 months to 12 months do get approved?  This is how long it took when Julie and I arranged her donation and my transplant.  Each situation may be different.  Go to Living Donors Online for more info.

Why do people with type O blood take much longer to get a transplant?  The University of California San Francisco’s kidney transplant webpages  says that people with all other blood types can accept donations from their own group or type O, but that people with type O can only accept donations from other people with type O, thus limiting their options.  However, this may not be true any longer. See this story.

Good Luck to you Jackie and your son, and keep in touch!  Greg

4 thoughts on “The Big(D) questions: How to keep going; PD, HD or a transplant?

  1. I had a lot of those questions when my husband was given the news of kidney failure. He had the surgery for the fistula in May and found out that it branched off and has to have it corrected. The bummer is, he would have been able to start dialysis next week if all went well. There seems to be more set backs with this disease. We live in America, and I find it hard to find a blog like this one. Thank God for this blog. It is healing and informative.

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  2. Message in response to the question fom Dan.
    You may like to consider doing nocturnal/overnight Heamodialysis when you get your machine home. The advantage for you will be, extra time on the machine which you won’t notice if you sleep well enough and by extention the emotional rollercoater is less of an issue if your sleeping through it. Also, your blood figures will dramatically improve making full time work a bit easier for you.

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  3. Hi, I’d like to reply in response to Dan also. Our circumstances are very similar.

    I’m 31 and landed back on Dx after my transplant failed in 2011. I’d also recommend nocturnal Dx – especially if you’re already trained for home. Before starting nocturnal I was also having terrible trouble with phosphate. I was taking 12 Renagel a day and still struggling with high phosphate and associated itching. There was almost nothing I hadn’t cut out eating trying to get it down. It’s really not something you want to leave unabated because it causes problems with calcification of the arteries. However, after my first 8hr nocturnal session it pulled my phosphate down well within the normal range. I was amazed. It takes the extended hours for the phosphate to come out of the cells and be removed by Dx.

    I now do 9hrs every second night and feel really well. My days are free and my diet is much less restricted. It took a good three months getting used to sleeping with Dx. Probably almost 6 months before I felt like I got a decent sleep, but it beats dialysing in centre or during the day. Sometimes I’m tired after Dx, but I just have a sleep in and then feel good to go.

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  4. I found pd a lot easier, doing it over night for 8 hours. That way I have the days to myself again. I learned how to do the machine myself in two days and was on the machine at night on the second day. I highly recommend nocturnal pd..

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